My editor put a call out in our Facebook writer's group, asking if anyone wanted to cover the Jennifer Hawkins and Donald Trump story. A colleague pitched an angle, and it inspired me to share my own experience of being silenced because I was afraid of someone in power. I sent off my experience to my editor, and Jenna Price wrote this article for Daily Life with a few of my quotes.

I think it might be pretty common for women to experience harassment or uncomfortable comments from a manager or senior member in the organisation and not speak up because of the ramifications to their career. It's happened to me, a number of times. I wanted to share the whole story with you, so here it is.

I put so much of myself into my writing, and so readers - and editors - come to know me very well. Perhaps they feel my candid writing about my disability gives them permission to enquire, or joke about it, more than a stranger.

I was at a conference, hanging out with fellow writers. I always love seeing my writing friends in person - they just get the industry, and we talk so much online it's nice to see them in real life. It had been quite a successful time for me - winning several writing awards and being published across many networks.

One editor, who, along with their team, gave me such a great opportunity, made a few comments about my skin.

"I wanted to slap you on the bum but I didn't know if it would hurt you", they said as they greeted me while I checked into the hotel. I laughed it off, air kissing them back.
Did I hear right?

I dropped my bags in my room, and then headed down to the hotel bar. A number of us chatted over cocktails and snacks, talking a mile a minute. It was truly great to see everyone at this annual conference.

An hour, one cocktail and lots of selfies later, I got up to leave, saying I wanted to have a shower and get some rest before that evening's event. "Don't leave your skin in the shower", my editor laughed.
I waved everyone off, cheeks burning. When I got to my room, I told my friend who was sharing with me what was said. My roommate agreed it was strange, but we agreed it was just a joke, not meant with malice.

It was such a personal, odd thing to say. My editor hadn't commented on anyone else's personal attributes as they had mine, not that my writer friends had any obvious disabilities that I knew of.

A few months earlier, I had written a long post on Facebook (later inserted into a blog) about how my fears of staying in shared accommodation while traveling were conquered when I was forced to shower in a hostel. Fellow travelers had to see me first thing in the morning - face unwashed, dry skin - and I came to be comfortable with that. Perhaps my editor had read it? Of course, I was - and still am - conscious of leaving my skin behind, so my editor's comment made be burn up in front of my colleagues and friends. What if I did gross out my roommate by leaving skin behind in the shower? (I later vowed not to apologise about my skin.)

We glammed up for the evening. My friend and I were five minutes fashionably late - she looked so fabulous by the time she put on her makeup and curled her hair. The lift to the bar was full - and my editor was in there. We squeezed in. My editor spoke up: "what took you so long ladies? Did Carly spend ages getting the skin on her face ready?", they asked.

I was mortified, but quick. I said "No, Liz* spent ages putting her makeup on. I don't need makeup."
The lift was silent. I got no apology. This third time frustrated me.

My writer friends drank and chatted the night away. Of course my editor's comments were not enough to make me worry about my appearance, but I did worry I was giving so much about myself in my writing that it made readers comfortable to say really awkward things.

When we returned to our hotel room after the event, my roommate and I discussed what happened in the lift, at the bar and at reception. We couldn't quite believe it. (When I called her about mentioning her in this article, two years on, she still agreed it was weird.) I said those things have stuck with me for years and I didn't want to speak up. I worried about my career.

While perhaps my editor was so familiar with my work, and sees me comfortably making jokes about my skin, they felt it gave them permission to make a joke too.

But here's the thing. They were in power of me - at the time I had a writing contract with that publication. It was good money and I didn't want to jeopardise the contract or my reputation with my editor and their team.

But as an employee and contractor with a disability, insensitive or discriminatory comments about my disability from my superiors can be difficult to manage. Who do I tell when the person making them is the boss? What if, by being assertive and saying these comments make me feel uncomfortable, I am breaking a code of conduct.

On the weekend. Jennifer Hawkins said "I've said it before, he has treated me with respect, and so has his family. Beyond that, what else am I going to comment on," she said. She said she didn't want to get involved in making a political comment."

He has given her many opportunities as Miss Universe. At one stage he was her boss. My editor gave me many opportunities too. But it's comments made from people in power who stop us speaking up. And it shouldn't.

These sorts of comments because of familiarity would never happen in my regular day job as I don't "put myself out there" as much as in my writing. But how does that excuse the comments from my editor? It was really easy to blame myself because as online writers, we are constantly on the receiving end of justifications for negative and abusive comments. And perhaps Jennifer Hawkins (and the public) felt like she should have just laughed Donald Trump off because she's in an industry that focuses on physical beauty. It still doesn't make it right, though.

I've never spoken to anyone other than my hotel roommate about how I felt when my editor made comments about my skin. I excused them because I felt I invited them by making readers comfortable enough to feel they can have a joke with me. Just like readers ask how sore I am, because I wrote about it. But I never asked for it. My editor held the payment and writing opportunities over me - but they also made me feel more self conscious than I needed to. All for a byline.

Writing this piece felt cathartic. I might be risking my reputation in the media industry by speaking out (just as I've been told that I might be overreacting or too sensitive when I've spoken up about bullying in my day job), but I don't want my silence to be complicit anymore.

24 October 2016

Jason and I launched our podcast four weeks ago and I haven't blogged about it yet. Sorry. I was overseas. Anyway, here it is! It's called Refreshements Provided and it's an irreverent chat, mostly based on food, but we talk about what we've been watching, reading and doing too.

Jason and I are huge podcast fans, and have been talking about starting a podcast of our own for about a year now. We've done quite a bit of planning, and it's come together well. It's been a lot of fun recording each episode. Really it's just a recording of two friends having a chat. It's really nice to talk about light hearted stuff rather than activism. I giggle a lot. When we are more practiced, we will invite some guests.

19 October 2016

Warning: This post contains content about violence, murder and suicide related to disability.
I've been struggling reading about the alleged murder-suicide that happened in Sydney earlier this week.

Two parents, their children and their dog were found dead in their home. Police report an elaborate gas system was deliberately set up in the home. Media states the children had profound disabilities and their mother struggled to cope. Neighbours said they were good, loving parents.

(It has also been reported that the mother wanted to move back to her homeland of Colombia " to relieve the crushing pressure of raising two severely autistic children.")

That's all we know for now. I hope it was an accident.

But police have confirmed the worst. And the focus on the children's disability in reports suggest their disability might have been a motive. While we don't know all the facts the media has a lot to answer for in its reporting and portrayal of people with disabilities.

The commenters sympathise with the reports of the alleged murder-suicide. Comments like: "It's understandable." "Walk a mile in their shoes." "We shouldn't judge." "It's so hard raising children with special needs." "As a parent pf children on the spectrum, I relate." And "It was an act of love." (You can read some actual comments here)

I cant imagine the pain felt by the family's loved ones.

It's a tragedy too awful to comprehend. The wider disability community is hurting too. This needs to be talked about. And I have tried to write this as respectfully as possible.
If this case does relate to the stress disability has on a family, then...

The level of sympathy towards parents who kill their disabled children is much different to the level of sympathy towards other parents who have killed non disabled children. (Briannon Lee also writes about the level of focus on the parents in these stories, as opposed to the children. Read her excellent piece from an autism/parent perspective here.)

When Robert Farquarson drove his car into a Victorian lake on Fathers Day 2005, killing his three children, media described the murder as "incomprehensible" and a "cowardly act".
But when a parent allegedly murders their disabled child, the public (and judges, jurors) sympathises, emphathises even. Because it's difficult raising a child with a disability. This is ableism. It is as though a disabled life is worth less than a non disabled one.

Countless disabled people are impacted by violence and murder, and the whole disability community is affected by how these cases are judged and the way the media reports on them. These incidents aren't infrequent. (You can read about some of the disabled people who have been killed in Australia at the White Flower Memorial page. The White Flower Memorial serves to remember those with disabilities who have died in institutional care, in detention and in domestic care situations.)

I've not been a parent (nor a parent of a disabled child). I haven't experienced the strain and the worries. I don't have autism. But I've been a disabled child. I've seen my parents struggle. Ive experienced discrimination, exclusion, financial hardship, pain and ableism. I've also been told that I shouldn't have been born, and that I'm a burden. Many of my disabled friends have heard similar things about them too.

Tragedies like Monday's shake the disability community. It's incredibly sad - I'm saddened that the family is dead and I'm sad a lack of support may have driven a parent to this. But I'm sadder at the commenters justifying that killing disabled people is understandable because the children are disabled. This does nothing for disabled people's self worth. Imagine what it's like to hear news reports about murders of people like you, or to read comments that are (often unintentionally) ableist, saying they understand why a parent may have murdered their disabled child? Many disabled people are struggling with the news right now, especially with the commentary excusing it.

When a parent kills their disabled child, it's believed to be a mercy killing. Hell, an anonymous mother has already penned a piece for Mamamia saying she and her husband have discussed killing their disabled children.

In 2014, after Geoff Hunt murdered his wife and children and then killed himself near Holbook, media reports painted him as a victim. It was a burdensome task looking after his wife who acquired a brain injury a few years prior. It seemed understandable, why he murdered his wife and kids.

"When we hear of a crime like this, we quite rightly recoil in horror. And yet, when we hear that a murdered wife is also a woman with a disability, we can find ourselves a little bit less horrified. As though her status as a disabled woman gives us a little more empathy towards the perpetrator of violence. It's victim blaming at its very worst."

Again, if this case does relate to the stress of disability on a family, then...

More respite and emotional support needs to be provided to parents and carers so it never comes to this. Stigma around disability needs to be erased. Perhaps a white flag system needs to be in place - when someone is struggling, they can safely take their children to care. I don't know the answers, and I can't bear to think why this happened, nor read the comments.

We all need to play a part in ensuring people with disabilities and their families are included and supported in the community, and can ask for and receive adequate help. But murder is never justified because a child or adult is disabled and it becomes too much for someone to cope with.

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The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.